A bit of history to bring this blog up to speed….
Overwhelming grief and despair, something we’ve all
experienced in life at one stage or another.
It’s a normal part of life. I
guess as a twenty-something year old facing your own mortality doesn’t feel
normal. It’s not what you had
anticipated for yourself. Travel,
career, buying a home, getting married, having kids and making plans for the
future is what you expect to be yours.
We think of it as our right.
As a 25 year old who took care and paid great attention
to her health, being diagnosed with cancer was a complete shock. It felt like a terrible joke and it took a while
for what the specialists were saying to sink in. Part of me refused to believe it. But sure enough, it did sink in and my world
came crashing down.
A bone marrow transplant is currently the one known
treatment that can cure me. I had one of
those in 2010 and it’s no easy ride.
However, my specialists were thrilled with how I had done and we all
felt great hope for a full recovery.
Time passed. I
picked myself up and looked to the future with excitement. With a new lease on life and clear goals
firmly set I moved forward with renewed gusto.
It became my mission to achieve all the things I’ve wanted to do that
were almost taken away. But it was forever
in the back of my mind. Will I relapse? The anxiety underlies everything. I tried not to let myself get too
excited. Whilst visualising a life I
wanted was important there was a hesitation to become too hopeful just in case. I wanted time to pass quickly, to get to the
one year mark, the two year mark, the three year mark and eventually five. Five years is when you are officially
declared cured. I was almost scared to
breathe until that time passed.
Two years went by. The specialist told me my chances of
survival had doubled. I finally allowed myself
to relax a little. I’m going to make
it! I was given permission to travel the
world and was told not to worry about doing blood tests while I was away. Brilliant! Let’s go!
Great times! New
sights, new experiences, new friends and my favourite part of travel – self
discovery.
I’m not entirely sure why, but I got a sense I needed to
do another blood test during my travels and I did. Platelets below normal range. Shit. I’ve
seen that before. I knew what that meant.
Being told I had relapsed, that the cancer had come back
stronger and my chances of survival were significantly less than good……how can
I explain it? Crushed. Bewildered. Angry. Disappointed. Grief so strong that it’s unbearable to be in
your own body. Extreme fear and panic
every time reality crashes in that you can’t run away from. Numbness, weakness, hyperventilation,
vomiting. Helplessness. I would say for the majority of the time,
myself and my supporters have tried to process our emotions separately and in
private as a means of keeping each other brave and strong. I guess the risk with that is further feelings
of isolation and helplessness for all involved.
I have been back home in New Zealand for almost a year
now. In that time, my specialist has
given me one dose of DLI (donor lymphocyte infusion) therapy. After declaring he didn’t think it would work
he agreed some months later to give me a second stem cell transplant using the
left over donor cells I have on ice in Auckland. I felt very lucky considering they have only
given two second transplants in the last ten years. In went the Hickman line and we were all set
to go. A few days before temporarily
moving up to the big smoke for the transplant I received a phone call to say it
was no longer going ahead. My latest
bone marrow biopsy had shown the disease was on the move and they didn’t think
a transplant was going to work. There
was nothing they could do for me anymore.
A stem cell transplant carries a lot of risks and is a very unpleasant
procedure to go through. It takes a lot
of mental preparation beforehand to work up the courage to go in for it
especially when you actually feel healthy as you are. I had built my courage and my hopes up for a
cure so to have it cancelled on me was a kick in the guts. It was certainly a bit of an emotional
rollercoaster.
My specialist had his reasons for not putting me through
transplant. It was to let me live out
the rest of my days with a reasonable quality of life. However, it felt as though he effectively
wiped his hands of me. That is a very
scary thing. I felt hurt and
abandoned. My specialist had lost hope
and now so had I. “How long have I got
to live?” I couldn’t believe it had
gotten to the stage where I was asking this question and to be asking someone
else how long they felt I was going to be on this earth for made me feel beaten
down and angry. I put the phone down and
couldn’t help but cry in front of my boyfriend.
“He thinks I have less than 12 months.”
I felt sorry for the hurt and disappointment I knew he felt. Now to walk downstairs and into the living
room to look my parents in the face and tell them the news. How do I do that? And how do I do that to parents who are still
yet to overcome their grief from losing a son in the past?
Whilst Auckland had wiped their hands of me, it turns out
God was still keeping an eye out. I have
found myself a new specialist in Hamilton who is awesome. Dr Hugh Goodman has worked so hard to get opinions
from other specialists in NZ and overseas and offered to help me push the Auckland
team for the second transplant. Every
visit my supporters and I roll into his small room and he does a great job of
answering our lists of questions. He
takes the time to read information I provide him with about complimentary
therapies I am using and is happy to give me his medical opinion on them. He is honest, he doesn’t give me false hope
but he discusses results and options with compassion and genuine care. Perfect.
Making the decision of
whether to fight for transplant or not was the hardest I have ever made in my
life. The options were, fight for
transplant, which has a greater chance of killing me than curing me or go on a
drug from overseas to extend my life by about 9 months. Even though I was informed going down the
drug route would be a more pleasant way to die, sitting around waiting for it
to happen didn’t feel like an option to me.
I chose transplant.
The waiting game.
Anyone who has dealt with any hospital will know this game well. It is not unusual to wait 4-6 weeks or even more
to find out what decisions / findings have been made even when your life is hanging
in the balance. This is something I have
become accustomed to over the past four years.
At first these weeks of waiting were excruciating. Now I use them as a chance to forget reality
and pretend I have a normal life. It’s
bliss. Going to hospital to see my
specialist scares the crap out of me.
Reality kicks in again and everyone’s hope and optimism takes a slight
beating. It always takes a while to
gather strength again afterwards.
On the 7th November I will hopefully find out
whether I will be accepted for a second transplant. Until then I’m going to Samoa to bask in the
sunshine with my family and boyfriend.
It will be our first family holiday overseas together and a welcomed
break by all.
No comments:
Post a Comment